April 21, 2015 at 7:10 am #824
Hi all! I’m new to this group. I have a history of a burst AAA at the Right common iliac artery juncture when I was 19 and other smaller haemorrhages over the years. I was only diagnosed with POTS a few years ago after fainting 40-50 times in a month. My question is really about this Brain MRI report I recently got hold of. I’m trying to get the actual images still to see what they’re talking about.
I’ve been getting headaches/migraines and other unusual feelings like bone grinding on bone on the base of my skull/neck (I could go on and on!! :-)). Would you recommend getting a second opinion from a ?neurologist (would they be the best person to see), to see what “aberrant vessel” means, as well as “empty sella” means? Am I over-reacting and trying to read something into a report that isn’t there? Would they say “Aneurysm” if there was one there, or would they use the word “Aberrant” and leave it to the doctor reading the report to follow up on it?
Thanks so much for taking the time to read this. I’m looking forward to reading a lot of the other conversations to learn more!!!April 21, 2015 at 10:20 am #5445Dr. DianaKeymaster
Hello, and welcome! We are all eager to try to help you if possible. Personally, I doubt that any of us could even think of answering your questions based on a report, however. We do notice that some things are missed on our MRI’s, though, and like you, believe that looking at the raw data (and asking for second opinions) can be hugely helpful. Of course, many of us with empty sellas also have undiagnosed high intracranial pressure. Interesting. Because some of us have vascular EDS, I am curious if that is one of your challenges? Thanks for sharing! 😉April 22, 2015 at 1:23 am #5448
Thanks so much for replying Dr Diana
I’m hoping to get hold of the actual MRI soon (but I suspect it will take a while, given how long it took to just get hold of the notes etc). I did see a geneticist a few years ago to rule out vascular EDS. Apparently mine didn’t match with the 6 most common forms of arterial rupture – the COL3A1 seemed to be clear, although they kept some blood on file in case it was something that hadn’t been mapped yet. I’m not exactly how all that works. So I’ve been left with “we think you’re a bit of an unusual bird, but we don’t know exactly what it is, but it may be/probably is in the EDS spectrum”… I’m not so concerned about me, but more about establishing a diagnosis for 1 of my 3 kids who seems to have more features than I would have done at that age.
In the meantime, I will ask my General Practitioner (I’m in Australia) for a referral for a second opinion!! Thanks so much for your input and wisdom 🙂 I really appreciate it!April 22, 2015 at 1:37 am #5449
This is the original report of the aneurysm that burst when I was 19. The pathologist questioned whether it could be Marfan syndrome at that stage, although the vascular surgeon must have not thought it was worth mentioning to me 😉
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